Hi there, it’s been a while, I’ve not been receiving emails updates for some reason. I just thought people had stopped posting! Quite the opposite if seems. So just been having a catch up over the last few days reading posts, phew I missed out on a lot it seems. Anyway... currently in a bad relapse the last month or so & this LDN (low dose naltrexone) keeps popping up, so doing a bit of research on it. From what I’ve found so far - same with most things - it helps some but not all & can make some worse. Have any of you heard any stories of it or tried it at a low dose yourself?
Hi there. I haven’t been getting notifications as much either. So strange. In regards to LDN ( Low dose nalterxone), I’ve also heard that some sufferers get relief from their symptoms, but like anything else, some do not get any relief and it can make symptoms worse. I really wanted to try it and brought it up to a functional medicine doctor a few years ago, but he didn’t seem to know much about it. Hope that you can find a doctor willing to try it, as everything I’ve read about it sounds promising. Good luck! KPD
I’ve just started this at 0.5mg this week (only been taking it for three days). No side effects so far, feel slightly anxious today though. No improvement yet either. I asked around and people are saying you should know if it’s working or not in about 4-6 weeks after taking it but that it takes a while to build up the dose anyway so we shall see. I would also be interested to hear of others experiences with ldn.
From what I have heard so far it seems to be more positive experiences than negative. Those with negative experiences it just seems to have made no difference rather than making anything worse.
Good luck if you do decide to try it.
Hi Pet,
Just wanted to say that I have been in the same boat with the no notifications.
Beverley
thank you. yes i guess we all respond to different things. so may be worth a try (if my doc will prescribe) i may have to educate him as like you say he may not know much about it in terms of helping cfs:me.
HI, yes be interesting to keep us posted how you go with it. i hope the anxiety doesn’t cause you too many problems. are there any interactions with other drugs do you know? i hope you manage to find some relief. i’m a bit of a scardey cat when it cones to trying new things so may wait a while until i’ve done a little more research. Good luck.
HI,
yes hopefully admin are reading & will try & fix this issue!
Hi Pet,
I hope so, it was getting frustrating as I would look at talks I was having and there were messages there I knew nothing about, they weren’t even going to spam. definitely getting them today though.
I am a bit like you, not sure about trying medical interventions until I have reassurance I guess.
Beverley
HI Beverly,
i have also been Receiving notifications - albeit later than the chat was posted I think. Maybe admit fixed it after all. (Thank you admin)
I also joined another online group yesterday LDN for cfs/me & fibro. I put the question out there too & had a few positive responses. One lady tells me after 3 months of taking it she learnt to walk again & recently walked a mile! With no repercussions. She also had her 1st jog on Friday!!! JOGGING!!! I dream of the day I can work out again!! & she is once again applying for jobs - after 11 years of struggle!! This really made me smile.
Reading a few other posts it can cause anxiety in some & they say they miss for a day now & again & it helps. One said it really helps her sleep which as we know can be a massive help! (Although can cause vivid dreams)
I need to do a little more research for a while & trying not get my hopes up too much but this is the 1st thing in a long time that’s giving me some hope 
Hi pet,
That sounds really encouraging, Is it a life long medication? I guess the anxiety issue calls out to me as my levels can get pretty high as it is. I wonder if you have pre existing issues that it hightens them?
I remember a couple of years ago light therapy was a popular topic on here with some people being helped by it? I don’t know if the revamped site still allows you to access the old threads like it used to but, maybe worth a look while you’re researching.
Beverley
Hi Beverly,
I’m really not sure if it’s a life long medication. I wonder if people’s immune system starts to work properly & they can gradually wean off (I’d like to think so!) or if they wean off & get symptoms back again (not so good) I’ll have to put that question out there! I also worry about the anxiety effect too as also have this. More research needed when I’m feeling up to it.
Re:- the light therapy - what is this? What kind of light do they use?
Gosh I sound so desperate! I am! Ha… As we all are!!
Pet
Hi pet,
As far as I remember it is the light boxes they use for things like Seasonal Adjustment Disorder (SAD)
I think we would all prefer to be our pre-cfs/me selves and anything that helps others could help us and maybe worth a try! I would love to go away for a month and have treatment and come back my “normal” self , that would be awesome. I do know of people who have recovered though without any treatments so, there is hope of recovery from different angles.
Good luck with the research.
Beverley
Oh how I love that idea / to go away for a month & come back my pre cfs/me self. I’m a shadow of my former self, but i’m still hete somewhere inside waiting to break free. I often say I wish there was a rehab place we could do this.. good to dream. I love hearing of people’s recovery stories & I’ve heard a few. We have to live in hope that one day it will come!
Yes! Wouldn’t it be nice to go somewhere and return cured from CFS! I always divide my life into 2 parts-the life before CFS struck me and robbed me of so much and the life after CFS!
I must admit that I had periods in my life (as I was struck with this illness in my 30s) where I functioned pretty normally. I actually managed to have and raise a child and work a part-time teaching job. Now in my 50s, my condition has gotten even more unpredictable which leads me to think that my symptoms could be associated with hormones or the lack of! That’s not to say that it is the cause but certainly the fluctuation of hormones have made the symptoms worse.
In my search for treatments that might help, I also found some information on the thyroid possibly contributing to CFS/ME. I know this discussion is mostly about LDN, but having your thyroids tested could be helpful, especially having the Free T3 levels tested. New data is finding a link between low free T3 levels and CFS.
Still hope that some more people chime in here about LDN and if it is helpful. From my understanding, it helps support or boost the immune system, right? Unfortunately, they still do not know the cause for CFS, and I think there are different causes. In my case, I think I had an allergic reaction to something and that my immune system over-reacted. I believe that my case is autoimmune rather than an under active immune system.
Pet, meaning to ask you…what do you think caused your relapse this past month and at what age were you first diagnosed? Did it come on suddenly or gradually? KPD
Oh if only there was such a place. Like you I also look at 2 parts of my life, I grieve for the old me. I was so fit & healthy, had my own hairdressing business & a single mum bringing up my 2 daughters, very capable, a real gym bunny, a social butterfly. I’ve been told I need to stop comparing & come to terms with how it is now as it’s causing me to continuously fight! It’s hard as I’m sure we all do it. I had a relationship breakdown in 2008 & an operation very close so i think trauma was a big factor plus I burnt myself out physically & mentally. I also cared for my sick mum & she passed away. I was fiercely independent & wouldn’t let anyone help, which is why I’m struggle now. I need help & I keep pushing myself to do little jobs around the house, go to friends for dinner (when I really shouldn’t) even though I rest there in between courses etc. I just want to do normal things now & again - albeit I pace round them massively & get the pay back- hence this relapse. It’s been 11 years now, mostly house bound for the last 6 when I had to give my business up. I’m 49 now & think I’m also hitting menopause so like you say probably not helping things. I’m coming back as a man next time! No offence you guys who may be reading ha.
So is free T3 something different to the normal thyroid tests? Will the gp do it? As I’ve had the normal ones with gp & they’re always normal. Funny though how my throat always feels restricted like it’s being squeezed, can be hard to talk at times. The thyroid gland is in the throat is seems it has to have a connection somehow.
Wow that’s took hours to collate this message.. Brain fog now, rest time now oh I’ve always got so much to say!! Well I was a hairdresser - I guess it never leaves you lol
pet
Hi Pet,
Here is a link to an article I read about low T3 levels found in CFS patients. If you google the subject, you will find a lot more information. It is quite complex. I’m not sure they will allow me to share the link on here, so if it doesn’t show up, just google, “low T3 levels and CFS.”
Hope this helps. And yes I do long for the days I could work a full time job, jog a few miles daily, and then have time to be social. I struggle to get out socially, but try my best to do so on occasion because it makes me feel somewhat normal. I do pay for it the next day. KPD
Thank you for this KPD
I will look into it
I hope you’re having a better day
pet
Ha ha I have the same dream, I will go away somewhere, some relaxing rehab place and be my pre cfs self. In fact it has became a bit of a fantasy, a way of falling asleep when I am worried and anxious. I also feel that my real self is still inside just waiting to break free. I also love reading about and reading recovery stories. You have to stay positive I guess.
By the way one of my doctors also prescribed low dosage naltraxone. I have taken it for a while now with no effect. I am in a relapse but I dont think it is connected with the low dos nal. I am about to speak to my doctor tomorrow in fact to discuss.
Hi Charlie,
Oh yes it’s so good to be able to visualise - it can really take you away.
Wow you’re lucky one of your doctors prescribed LDN for you, it’s quite rare it seems. What dose are you taking? I hear low & slow is best. Lots of people say it can worsen symptoms initially for a few weeks as it kicks up the immune system & it fights. I’ve also learnt most people say they take a 1 day break every week from it.. even those that have been on it for years do this, so it may help to miss a dose to kick start again??
pet
It works for some, it makes it worse for some and it doesn’t do anything for others. This to me seems like people having ups and downs and the LDN doesn’t influence in any way, just like supplements in 99.99% of cases, unless there’s an obvious need for them. The desperation of people with CFS is huge and people try to take advantage. The body is too complex and currently there’s no medicine solution to this problem, the only good bet, in my opinion, is to rest as much as possible, try to relax mentally, avoid stress and try to test different eating patterns (eating different things, different amounts, etc). It took years for me to recover 90%.